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MrValenza on 24 February 2016

Category: Getting help

Replies: 14

Last updated: 4 March 2016

New Guy
by stemeltony (Mar 4)

Hey Alessio,
i was dxed last October and been on dasanitib 100mg until today. Sometimes u will have ups and downs in your life but don't let that get to you. I still live my life just like

by MrValenza (Mar 2)

Hi Elaine,
Thanks you thats very reassuring words and I'm glad to hear your son is getting on well! I can imagine being at Uni as well it must have been quite difficult at first but good to hear

by ElaineW (Mar 1)

Hi Alessio
My son was diagnosed with CML when he was 20 and at university. I've written something about this on a recent thread by Jade called "Hi"
As far as I can judge (because he

by darley (Feb 29)

In truth I've not been through the same thing. I was diagnosed and first commenced treatment in the days when there were fewer treatment options and life quality and expectancy were
Category: Getting help

Replies: 14

Last updated: 4 March 2016
bobosbo on 25 July 2009

Category: Uncategorised

Replies: 13

Last updated: 4 March 2016

New Member
by stemeltony (Mar 4)

Hey Bob
true. All is not lost. I am newly dxed in Oct 15, had floaters in my eye and that is how i found out. BC was 450,000. Now on Dasanitib for almost 6 months. Will have aches and pains but life

by kurt (Sep 20)

Had my first blood tests yesterday, my white blood cell count came down from a starting point of 190, to 118, not bad for the first week's treatment, my oncologist is very happy with my progress.

by kurt (Sep 15)

I started with my Gleevec treatment 5 days ago, no side effects whatsoever. I take my tab after dinner with a large glass of water, have another glass before I go to sleep. Can't wait for the 1

by kurt (Sep 10)

Hello all, I am from Johannesburg, South Africa, and was diagnosed with CML last week, there does not apear to be a local CML support forum in SA so I hope nobody objects to me being here.

My
Category: Uncategorised

Replies: 13

Last updated: 4 March 2016
Ole Fart on 25 February 2016

Category: Side effects

Replies: 1

Last updated: 3 March 2016

Fibromyalgia
by Parklife (Mar 3)

I have noticed that your post has dropped off without a reply yet. It may help you getting a response by perhaps some kind of picture about your stage of CML and what TKI you are on.
Hopefully

by Ole Fart (Feb 25)

Has anyone experienced change in severity of symptoms of pre-existing fibromyalgia after beginning treatment?
Category: Side effects

Replies: 1

Last updated: 3 March 2016
David Ryner on 3 March 2016

Category: Uncategorised

Replies: 3

Last updated: 3 March 2016

News about the availability of dasatinib in England
by nigel (Mar 3)

Hi David,
Many thanks for your post, information, and update. To see Dasatinib finally available to the CML community in England would be outstanding. It is a shame to see money being the overriding

by David Fitz (Mar 3)

That's is certainly a move in the right direction.
As someone who had to fight tooth and nail, and privately fund it for a while, in order to get NHS funded dasatinib I massively welcome

by darley (Mar 3)

ALWAYS good news to read about the possibility of more treatment options more readily available.
Takes away a weight of unnecessary concern from folks who sometimes get caught in a mess.

by David Ryner (Mar 3)

NHS England (NHSE) have just published a draft proposal that could result in dasatinib becoming available on the same routine prescribing basis as imatinib (Glivec) for newly diagnosed adult CML
Category: Uncategorised

Replies: 3

Last updated: 3 March 2016
rsgiles on 2 March 2016

Category: Treating CML

Replies: 1

Last updated: 2 March 2016

Question about Generic Gleevec
by David Fitz (Mar 2)

Hi,
I think we are certainly going to see insurance firms insist on generic imatinib from now on when imatinib is prescribed. It's clearly a decent cost saving for them.
In theory, there ought

by rsgiles (Mar 2)

I just tried to refill my prescription for Gleevec but my insurance company wants to give me the generic version. Does anyone have any experience with the generic version, is it as good as Gleevec.
Category: Treating CML

Replies: 1

Last updated: 2 March 2016
Parklife on 13 February 2016

Category: Side effects

Replies: 10

Last updated: 1 March 2016

Update in response to Chrissie.
by Parklife (Mar 1)

Bubble wrapped indeed.
Many thanks for your kind words. Hopefully as the weeks go by, I become closer to a more stable platform to build upon. Interesting that my IGA marker has now been clarified

by darley (Feb 27)

What a very difficult situation for you. I just sincerely hope that one way or the other that a root cause can first of all be found and then treated or managed so you've not in so

by Parklife (Feb 25)

Hi Sandy
I have researched alsorts. My only trouble being I have no idea what I am attempting to treat. I have mentioned Fibromyalgia, and have been told no, perhaps, then no again, had points

by sandy craine (Feb 21)

Hi John and Lucas,
ABL001 Phase 1 trial is - unfortunately - not open here in the UK. http://www.cmlsupport.org.uk/clinical-trials/abl001%E2%80%8B.
John... have you tried researching
Category: Side effects

Replies: 10

Last updated: 1 March 2016
Pravin Bhagwat on 1 March 2016

Category: Uncategorised

Replies: 0

Last updated: 1 March 2016

Positive Living with CML - wanted some insights and feedback on Tasigna & Log results
by Pravin Bhagwat (Mar 1)

Test
Category: Uncategorised

Replies: 0

Last updated: 1 March 2016
Reemt on 1 March 2016

Category: About CML

Replies: 0

Last updated: 1 March 2016

Children with cml developing growth hormone deficiency
by Reemt (Mar 1)

Hello, my daughter 11 years old has being diagnosed with cml for three years now.
she had a growth hormone test recently and we learned that with cml it induced the deficiency . The question is I
Category: About CML

Replies: 0

Last updated: 1 March 2016
Judith on 28 February 2016

Category: Uncategorised

Replies: 1

Last updated: 29 February 2016

Decision time
by darley (Feb 29)

Difficult decision for you. I'd want to know what your blood counts and particularly pcr results and if and whether you've reached MMR and been there for a decent period of time

by Judith (Feb 28)

I have just been reading about the Destiny trial and was wondering if anyone could give me some guidance as to an option i have to make. For over 4 years I have been on Dasatinib 100mg. For
Category: Uncategorised

Replies: 1

Last updated: 29 February 2016
Lynette on 21 February 2016

Category: Uncategorised

Replies: 6

Last updated: 23 February 2016

Test Results
by Lynette (Feb 23)

Thank you Sandy, David and Darley... excellent results that just keep on getting more excellent by the minute! Also, thank you to everyone who contributes to this wonderful site... i've not

by darley (Feb 23)

Take that as excellent news and a great result.
Welcome here

by sandy craine (Feb 21)

Lynette,
congratulations on an excellent response to TKI therapy (MMR or MR3 IS)... and welcome to this forum,
Sandy

by David Fitz (Feb 21)

That's great Lynette - getting to MMR in under a year is a great result.
At 0.027% you are not too far off MR4 (a 4 log drop from 100%) - which is an even deeper level of response than MMR (
Category: Uncategorised

Replies: 6

Last updated: 23 February 2016
cml.cure on 2 February 2016

Category: Side effects

Replies: 2

Last updated: 21 February 2016

Side effects of Imanib 400mg (Mfg by Intas, India)
by glo (Feb 21)

I get good results with having cereal that's fortified with iron. Taking pills is very hard on the stomach-but if you can get it through food it doesn't hurt and is supposed to get

by darley (Feb 3)

Seems she has iron deficiency anaemia. There's a lot of reasons why someone could have that and not necessarily linked to imatanib at all.
Suggest she discussed with her

by cml.cure (Feb 2)

My mother (age 69) is a CML patient and she is taking Imanib 400mg for last 3 years. Imanib helps reduce the WBC count from 100000 to 4000 which is within acceptable limit. Lately her haemoglobin
Category: Side effects

Replies: 2

Last updated: 21 February 2016
glo on 20 February 2016

Category: About CML

Replies: 6

Last updated: 20 February 2016

awaiting results of philedelphia test
by glo (Feb 20)

Hi-Thank you so much for validating my thoughts/concerns, etc. I sent a lenthy reply to Sandy's message, which of course the thoughts, cudos, etc are meant for you as well! I really

by glo (Feb 20)

Hi-Thank you so much for validating my thoughts/concerns, etc. I sent a lenthy reply to Sandy's message, which of course the thoughts, cudos, etc are meant for you as well! I really

by glo (Feb 20)

WOW!! Thanks for the clarification! Here, I thought I was such a wonderful researcher and I was fairly mixed up. I really thought CMML and CML were really both the same thing...

by darley (Feb 20)

You sound like a seasoned realist and I'm sure you're anticipated what other seasoned campaigners are likely say.
Of course the test you're having isn't taken for no good reason....
Category: About CML

Replies: 6

Last updated: 20 February 2016
rsgiles on 3 February 2016

Category: Blood tests

Replies: 6

Last updated: 20 February 2016

Worried about test
by glo (Feb 20)

I am new here, but I like that attitude-I always tell my twin sister, "control your emotions, don't let your emotions control you!" This has gotten me through 52 years of living

by darley (Feb 6)

So what's making you worry? What's different about your health since you knew you had this little blip? Why have you chosen to worry about it?
As you said you've

by sandy craine (Feb 4)

Please be reassured by others advice of 'not to worry' about your latest PCR result. Even if you have been undetectable before- pcr testing is extremely sensitive to all sorts of factors,

by nigel (Feb 3)

I truly believe you shouldn't worry about 1 increased PCR result, trends count and are looked at. Even if it is not undetectable now the result is not far off MR4 which in anyone's eyes is
Category: Blood tests

Replies: 6

Last updated: 20 February 2016
Frenchguy on 14 February 2016

Category: Uncategorised

Replies: 6

Last updated: 18 February 2016

Severe general pains
by sandy craine (Feb 18)

Hi Francis,
sorry these pain issues have not lessened even though you are taking a different TKI now. You molecular response is good- so at least you have some good news. You are certainly not alone

by johnw1001 (Feb 17)

Hi Francis,
Severe musculo-skeletal issues
I dont know if my experiences might help but have been on Glivec/imatinib for 9 years now but about nine months ago had a disturbing episode of

by Lucas (Feb 16)

Francis, i know other patient who is very intolerant to all tki but is doing well over more than 10 years of treatment. I'll ask him if i can send you his e-mail. i think you should chat with

by Frenchguy (Feb 16)

Hi Lucas,

Thanks for your concern, the thing is that I am getting worse day by day, feeling extremely weak like I never was before, especially in my legs which are painful and I never knew
Category: Uncategorised

Replies: 6

Last updated: 18 February 2016
David Ryner on 17 February 2016

Category: About CML

Replies: 0

Last updated: 17 February 2016

New Model for the Cancer Drugs Fund (England)
by David Ryner (Feb 17)

Recent developments in access to CML drug treatments in England
Background:
Some of you may be aware of the NHS England public consultation on a new set of proposals for the way the Cancer Drugs
Category: About CML

Replies: 0

Last updated: 17 February 2016
Jadey on 5 February 2016

Category: Uncategorised

Replies: 9

Last updated: 17 February 2016

Hi
by MartinZA (Feb 17)

Hi Jade
I'm so sorry that you have to deal with such a life-changing diagnosis at age 20. I am 37 and three months ago today I received my devastating news and I know how you feel - I

by darley (Feb 9)

Glad to hear that already your results are going in the right direction. Now for some practical suggestions with regard to things you've mentioned:
Veins: Here's

by Jadey (Feb 9)

Thank you so so much to all of you, Christie, Elaine and Nigel! I'm glad to hear everyone's doing so well, I'm getting to grips without it now and had my first result today and I've

by nigel (Feb 8)

Hi Jade

Welcome to the Group, I was very sorry to hear about your recent diagnosis, this first few weeks and months particularly can be unbelievably scary, we have all been there!

You
Category: Uncategorised

Replies: 9

Last updated: 17 February 2016
sandy craine on 11 February 2016

Category: About CML

Replies: 4

Last updated: 14 February 2016

2016 UK CML Patient Day
by darley (Feb 14)

I find Web casting on demand to be most useful. I've tended to watch them when I can and also just skip the bits I'm not interested in. (I'm self employed with my own

by chrissie (Feb 13)

Just wondering how you are these days, John?
Best,
Chrissie

by Olivia (Feb 12)

Hi Sandy
I would like to second John's plea for a session on withdrawal and the possible effects.
Also, a briefing on what the introduction of generic imatinib will mean for those of us

by Parklife (Feb 11)

Hi Sandy
Thanks for letting us know and giving us the opportunity to contribute.
Could I personally suggest a topic on TKI withdrawal, or continued side effects after discontinuation of TKI's?
Category: About CML

Replies: 4

Last updated: 14 February 2016
johnw1001 on 31 January 2016

Category: Treating CML

Replies: 3

Last updated: 8 February 2016

Generic imatinib again -some updates
by nigel (Feb 8)

Hi John
Thanks for a very interesting and detailed post and synopsis with regard to Generic Imatinib. I likewise shared your concerns with regard to the potential change that is on the way. However

by johnw1001 (Feb 5)

Hi Moirah,
Thanks for reading my posting and replying .Welcome to the CML/Glivec club -yes it certainly keeps us alive .Trust you are doing well in your first year which can be quite challenging.I

by Moirah (Feb 3)

Thank you for posting this. This is something im very worried about i was diagnosed july last year and doing well last pcr 6 months 0.067%
Can we really ask for monthly pcrs if changed to the

by johnw1001 (Jan 31)

Hi All,
There have been a few threads on this before and this included a posting from myself so no apologies for another separate thread as this for many of us will probably involve a switch from
Category: Treating CML

Replies: 3

Last updated: 8 February 2016
Samah27 on 5 February 2016

Category: About CML

Replies: 0

Last updated: 5 February 2016

CML and pregnant
by Samah27 (Feb 5)

Have been diagnosed with chronic meyloid leukemia 16 years ago. began prescribing glivec and I kept it for eight years after no longer responds physically to him then dropped for medication
Category: About CML

Replies: 0

Last updated: 5 February 2016
Jyellak on 4 February 2016

Category: Blood tests

Replies: 3

Last updated: 4 February 2016

Newly diagnosed question about PCR test at 3 months
by David Fitz (Feb 4)

I wouldn't get too hung up about 3%. After all, 10% is "optimal", so 13% is pretty damn good!!
Many of us here didn't get that 10% at 3 months figure, yet are doing great. Your

by Jyellak (Feb 4)

Thanks Sandy, appreciate your reply.

by sandy craine (Feb 4)

Hi,
I think you are doing very well to get to 13% at 3 months, which is virtually at the ELNet 3 month goal of 10%. I am sure your doctor is fully confident in your response and would not consider a

by Jyellak (Feb 4)

Was diagnosed end of October2015. Had my first PCR test at three months. Results said 13.128 IS. Onc said that's very good number but everything I've seen indicates that's supposed to be under 10
Category: Blood tests

Replies: 3

Last updated: 4 February 2016